Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination National Council on Disability March 22, 2018 National Council on Disability (NCD) 1331 F Street NW, Suite 850 Washington, DC 20004 Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination National Council on Disability, March 22, 2018 Celebrating 30 years as an independent federal agency This report is also available in alternative formats. Please visit the National Council on Disability (NCD) website (www.ncd.gov) or contact NCD to request an alternative format using the following information: [email protected] Email 202-272-2004 Voice 202-272-2022 Fax The views contained in this report do not necessarily represent those of the Administration, as this and all NCD documents are not subject to the A-19 Executive Branch review process. National Council on Disability An independent federal agency making recommendations to the President and Congress to enhance the quality of life for all Americans with disabilities and their families. Letter of Transmittal March 22, 2018 President Donald J. Trump The White House 1600 Pennsylvania Avenue NW Washington, DC 20500 Dear Mr. President: The National Council on Disability (NCD) is pleased to submit its report, Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination for People with Disabilities, which provides a comprehensive review of guardianship against the backdrop of the civil rights advancements of individuals with disabilities in the past several decades. While people with a variety of disabilities may face guardianship, the burgeoning aging population in America has forced issues surrounding guardianship to the fore in national media coverage and policy debates in recent years, making NCD’s report a timely contribution to policy discussions. Guardianship generally involves a state-court determination that an individual lacks the capacity to make decisions with respect to their health, safety, welfare, and/or property. Although guardianship is governed by state law, it entails the removal of rights protected by the U.S. Constitution. Additionally, individuals who are subject to guardianship are also protected by the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, which are laws intended to increase the ability of individuals to live and work in the community, encourage participation in civic life, and to promote self-determination for individuals with disabilities. The Beyond Guardianship report explains how guardianship law has evolved, explores due process and other concerns with guardianships, offers an overview of alternatives to guardianship, and identifies areas for further study. The report includes a review of existing scholarship on the topic as well as the results of a qualitative study of individuals with experience in guardianship and its alternatives, and offers major findings and recommendations to Congress, the Administration, and to state and local government. 1331 F Street, NW ■ Suite 850 ■ Washington, DC 20004 202-272-2004 Voice ■ 202-272-2074 TTY ■ 202-272-2022 Fax ■ www.ncd.gov Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 1 We stand ready to work with you and your Administration to work for improvements to the way in which individuals with disabilities who may require decision assistance are treated in the legal system and provided with assistance. Respectfully, Neil Romano Chairman (The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the U.S. House of Representatives.) 2 National Council on Disability National Council on Disability Members and Staff Members Clyde E. Terry, Chairperson Benro T. Ogunyipe, Vice Chairperson Billy W. Altom Rabia Belt James T. Brett Bob Brown Daniel M. Gade Wendy S. Harbour Neil Romano Staff Vacant, Executive Director Joan M. Durocher, General Counsel & Director of Policy Amy Nicholas, Attorney Advisor Amged Soliman, Attorney Advisor Ana Torres-Davis, Attorney Advisor Anne Sommers, Director of Legislative Affairs & Outreach Phoebe Ball, Legislative Affairs Specialist Lisa Grubb, Director of Operations and Administration Stacey S. Brown, Staff Assistant Keith Woods, Financial Management Analyst Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 3 4 National Council on Disability Acknowledgments The National Council on Disability (NCD) wishes to express its appreciation to Quality Trust for Individuals with Disabilities who worked collaboratively with NCD to conduct the research and writing of this report. Additionally, we would like to thank the Institute on Disabilities at Temple University for its involvement in the qualitative study that is included in this report. Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 5 6 National Council on Disability Contents Glossary . 11 Executive Summary . 15 Summary of Methodology . 17 List of Acronyms . 25 Chapter 1: Guardianship Basics . 27 Guardianship Fundamentals . 27 Questioning the Assumptions of Guardianship . 27 Rights at Risk in Guardianships . 27 A Word on Language . 30 Process of Obtaining Guardianship . 30 Overview . 30 Steps to Guardianship . 31 Court Determination of Incapacity . 34 Capacity and Scope of the Guardian’s Authority . 35 Ending a Guardianship . 36 Chapter 2: Guardianship Against the Backdrop of Disability Rights Law . 39 Guardianship as a Disability Policy Issue . 41 History of Discrimination . 42 The Eugenics Movement . .. 42 Institutionalization . 43 Civil Rights Expansion and Joining the Community . 44 Deinstitutionalization . 44 Independent Living . 45 Rehabilitation Act . 46 Developmental Disabilities Assistance and Bill of Rights Act . 47 A Right to Public Education . .. 47 Community Integration . 48 The ADA Generation . 50 CRPD—The ADA Goes Global . .. 51 Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 7 Chapter 3: Evolution of Guardianship Law . 53 Ancient and British Roots . 54 Pre-Reform: Guardianship in America . 54 Late 1980s, Early 1990s: First Wave of Guardianship Reform . 55 Early 2000s: Second Wave of Guardianship Reform . 57 Present Day: Third Wave of Guardianship Reform . 58 The Dawn of Supported Decision Making . 60 Revising the UGPPA . .. 61 Chapter 4: The Current Guardianship System in America . 65 The Current System Lacks Data . 65 Data on the Number of People Subject to Guardianship . 65 Data on the Number of Filings . 66 What Is Known from Limited Data . 67 2014 SSA Representative Payee Report . 67 2010 Study of the National Center for State Courts’ Center for Elders and the Courts . 68 State Data . 69 What the Lack of Data Means . 70 Does Guardianship Prevent Abuse or Lead to It? . .. 70 Chapter 5: Capacity and the Role of “Experts” in Guardianship Proceedings . 73 Introduction . 73 Moving Away from the “Reasonable Man” Standard of Capacity . 74 Philosophical Origins . 74 Behavioral Economics . 76 Capacity Determinations . 76 Who Decides Capacity? . 76 “Expert” Evidence . 77 Who Are the Experts? . 79 Varies by State . 79 Shortcoming of Physicians as “Experts” . 79 Tools the Experts Use . 80 Tests and Questionnaires . 80 ABA/APA Framework for Evaluations . 81 8 National Council on Disability Court Discretion and Due Process . 82 Limited Guardianship and the Functional Model of Capacity . 82 Chapter 6: Concerns About When and How Guardians Are Appointed . 85 Due Process Concerns . 85 Difficulty Accessing Zealous Representation . .. 88 Overuse of Plenary Guardianship . 88 Unequal Treatment Under the Law for People with ID/DD . 89 School-to-Guardianship Pipeline for Youth with ID/DD . 92 The Pipeline Problem . 92 Alternatives to the Pipeline . 94 Financial Costs of Guardianship . 95 Cost of Justice . 96 Public Funding of Guardianship . 98 Professional Guardianship in the Absence of Sufficient Public Funding . 99 Chapter 7: Concerns Once Guardianships Are in Place . 101 Overview of Concerns . 101 Guardianship: A Double-Edged Sword? . 101 The Impact on Life Outcomes . 102 Financial Abuse by Guardians . 103 Overbroad Guardianship . 104 Implications for Voting . 105 Sexuality and Guardianship . 106 Jurisdictional Issues . 109 Restoration of Rights . 110 ABA Commission on Law and Aging/Virginia Tech Center for Gerontology Study . 111 Restrictions on Restoration Efforts . 116 Chapter 8: Less-Restrictive Alternatives to Guardianship . 119 Olmstead Necessitates Finding Alternatives to Guardianship . 119 Introduction to Alternatives . 119 A Practical Tool for Considering Alternatives . 121 Alternatives by Context . 122 Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination 9 Financial Decisions . 122 Health Care Decisions . 126 Educational Decisions . 128 International Best Practices . 129 The Trend Toward the Alternative of Supported Decision Making . 130 Definition of Supported Decision Making . 130 Benefits of Supported Decision Making . 131 Areas for Greater Study with SDM Models . 132 How Supported Decision Making Works . 133 International and U .S . Support and Advancement of SDM . 134 Next Steps for Supported Decision Making as an Alternative to Guardianship . 137 Chapter 9: Stakeholder Experiences with the Guardianship System . 139 Overview of NCD’s Qualitative Study . 139 Methodology . 139 Analysis and Salient Themes . 141 Treatment Within the Legal System . 141 Supported Decision Making . 146 Access to Information About the Guardianship Process and Possible Alternatives . 149 Impact